Finally managed to convince my GP to test my ferritin level. The result came back at 94 and from reading posts here, I note the level should be above 100. Could someone clarify please if Ferritin is the same as Ferrograd. I have been using Pregabalin 175mg for about a year and find the effects of minimising RLS symptoms have now worn off and I am experiencing full blown symptoms again now at times, not always, but at times. Due to the Pregabalin losing effect I plan to cease the medication and have no treatment at all except for medical cannabis. Again could someone please advise a safe way of weaning off Pregabalin. I will discuss a safe withdrawal with my GP but would prefer to receive advice from this forum as my GP advises me he 'knows very little' about RLS and doesn't seem to be interested in learning about it despite it now being on the dsm5. Thank you.
Ferritin levels: Finally managed to... - Restless Legs Syn...
Ferritin levels
Ferrograd is the name of a brand of an iron supplement.
Ferrograd contains ferrous sulphate. I believe each tablet contains over 300mg of the sulphate. I'm not sure what amount of iron this gives.
Ferritin is a naturally occuring substance in the body. It consists of iron molecules bound to.protein molecules. This is the body's way of storing iron, that's not being used.
I hope this makes it clear that the two are entirely different things.
Ferrograd is a brand prescribed by Drs. They also can prescribe it two or more times a day.
The rationale for this is that the more iron you take and the more frequently you take it the more effective it will be.
Wrong!
Taking less iron, (under 60mg) and taking it less often, i.e. only once every other day can increase the amount you actually absorb by up to 50%.
Hence, it's better to take a lower dose over the counter iron such as ferrous bisglycinate (gentle iron).
An further advantage to this that gentle iron is less likely to cause constipation than Ferrograd.
In addition. The recommendations for iron therapy state the following
1) If ferritin is less than 75, then take an oral iron supplement.
2) If ferritin is between 76 and 100, the chances of raising it further by supplement are much reduced. You may need an IV iron infusion.
At 94, your ferritin level suggests you may need an IV infusion. However, since it was possibly less than 75 when you started, I suggest you continue to take it for now.
Doing everything you can to increase how much you absorb is very important.
Particularly, in your case note what I wrote earlier about dose and frequency.
PLUS
Take it at night on an empty stomach.
Take orange juice, vitamin C or folic acid at the same time.
Do not take any antacid or magnesium at the same time.
I have no experience of weaning off pregabalin, but it's always best to wean off these drugs slowly.
Note that cannabis has been shown to help.with pain, nausea, anxiety.and insomnia. Hence I'd recommend it. However note that there is no evidence to suggest that on its own it can relieve other RLS symptoms.
If the iron doesn't entirely relieve your RLS symptoms and you stop the pregabalin, you need a plan B.
I don't know about Australia, but in the UK, I have it on good authority that if a doctor encounters a patient with a condition they know little about then they are OBLIGED to inform themselves.
Whether they're interested or not.
Thank you so much for your comprehensive response. I am hopeful that more doctors will make themselves aware of RLS now that it is on the dsm5 list. I successfully withdrew my self off Sifrol, (can't remember the other name for it) a year or so ago, but this time will insist my GP assist me to make a solid plan for withdrawal from Pregabalin. The more I look at this RLS the more complex it seems to be. Regards.
Yes it is complex.
I'm intrigued that you mention RLS is now included in the DSM 5.
This is because the DSM is a classification of mental health conditions used primarily in the US. I didn't think that RLS could be considered to be a mental health problem.
I haven't been able to get free access to DSM 5 to see what it says.
RLS has been classified as a neurogical condition by the World Health Organisation for some years.
In the latest edition ICD 11, RLS is classed as a "sleep related movement disorder" not a mental health disorder. This has very dofferent connotations.
ICD 11 is freely accessible.
See this link
icd.who.int/browse11/l-m/en...
The ICD coding for mental disorders is totally separate, 06 not 07
I was surprised as well. I live in Australia but my family live in New Zealand. My granddaughter was asking me about my medical history via facebook over the weekend. I told her about RLS. She started researching the disease as she is a Psychologist. She was the one that advised me RSL has a Dsm classification.
I believe many people would be offended by it being classed as a mental disorder.
I don't know why people would be offended, mental illness is just that, an illness after all. Anyone under the right circumstances any of us could suffer from it. I don't believe in discrimination of any kind so I don't personally have a problem with it.
Some members say that when they've been to their doctors about their RLS, the Dr has said, it's all in your mind, i.e., as if their symtpoms are imaginary.
Other members also quite indignant if you make any suggestion that there might be psychological factors in RLS.
I am only reporting how members have reacted.
My view is that RLS is clearly a physiological condition and can see no real reason for it to be considered as a mental disorder. Psychotropic drugs or therapies which address mental health problems will not solve RLS.
I can see your point, I was more thinking that now RLS has again been internationally accepted as a true disorder instead of 'being in someones mind' it might force disinterested GPs into accepting it and become more inclined to make an honest effort to treat the patient instead of being so dismissive as some have been in the past. From Google documented below........., and I agree with you, there is no reason I can see why it should be classified as a mental disorder.
'RLS (Restless Legs Syndrome) is a DSM -5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition) neuro-motor, Sleep-Wake Disorder, involving an uncomfortable sensation e.g.- “ creepy-crawlies”, tingling, or burning, and a continuous urge to move the legs (American Psychiatric Association, 2013)'.
Yes I agree with what you say overall - no problem.
RLS, as I wrote earlier is recognised by the World Health organisation - you can't get more international than that!
DSM is American.
One of the main problems appears to be health professionals ignorance of the condition.
The DSM description of RLS is a pretty standard defintion used internationally, but doesn't explain why it might be considered as a mental health problem.
It is known that people with RLS are more likely to suffer such mental health problems as anxiety and depression, but then so does being poor and so does - - - -
Is poverty a mental health condition?
You hit the nail on the head. Anybody telling you that something is "all in the mind" is being "dismissive". This is unaccepatable and juist demonstrates ignorance.
Even accepting that something might be all in the mind, this still doesn't justify dismissing it. It's still a problem, still requiring help.
Obstructive sleep apnea is also in the DSM 5, which is equally weird.
Hi I weaned myself down from 150mg pregabalin 3times a day by asking for the pills in 50mg so I could slowly alter the dose each week until I could have 25mg then after that for a week just stopped pregabalin. It's not easy to do and your doctor might say it's not an addictive medicine so you can just stop it but do not do that as your body will just go into overdrive. I managed to come off pregabalin completely for about 8 months until I came to the conclusion it did have quite an impact on the rls by hiding the worst of the symptoms. I got hit hard by the rls when I stopped the medication so I am now back on pregabalin at a dose of 75mg and its just about controlling the rls. I did not realise I had rls until I stopped pregabalin. I hope this is of some use to you good luck and all the best to you. X
Thank you so much for your reply, and thank you for the advice regarding weaning off Pregabalin. I wouldn't expect it would be easy and I had not thought about taking the dose down to a very low 75mg. The pregabalin has its own set of side effects so decreasing the dose on a daily basis makes sense. I will give it a go.
It really does work, I was told to just come off it years ago so I did and it was like someone had unleashed he'll on to my body. This time I had a long chat with my doctor as was wanting to come off morphine at same time so she offered me gp lead rehabilitation. You need your doctor to be on board with coming off pregabalin, tell them what you need and want from them. You will need alot of support as you will have some very difficult days. Pregabalin hides alot of pain and sensation and some or all can come back and that can be hard so let people around you know as you may need their support. I really hope it goes well. Xx
I think Bstars says reducing it on a weekly basis not on a daily basis.
Weekly sounds better than daily to me.
Yes sorry it was a weekly basis as daily would be way too fast.
Don't apologise That's what you wrote, but Kelirock appeared to have misread it..
Hi, to clarify Bstars wrote
"I could slowly alter the dose each week until I could have 25mg"
which I interpreted as meaning that Bstars ONLY reduced thr dose after a week, NOT after a day.
However, you wrote "decreasing the dose on a daily basis makes sense."
which I interpreted as you saying that Bstars had wrote to reduce each DAY not each WEEK.
Reducing the dose daily is quite different from reducing it weekly.
Why do you want to wean off pregabalin when it worked for you? I would suggest increasing it instead. You are nowhere near the maximum dose.
I want to come off all medication really if this is possible due to the side effects of the drug and the fact that it doesn't seem to be helping now.
What side effects are you having?
side effects can be weight gain, dizziness, and addiction which are the main ones I was concerned about. I am 73 and already a high falls risk, Pregabalin can exacerbate this.
Are you experiencing any of these?
I lean towards @SueJohnson, I take 2 * 150 pregabalin (Night time only, about an hour before bed and bed time. I tried to reduce it by getting 100mg capsules and failed, My RLS is getting better over time, but I am dependent upon the pregabalin. At my age, I am not sure how much that will change.
Even though your iron is normal, I would still challenge you to try taking your iron about 2-3 hours before bed. As above, nothing to eat 2 hours before or one hour afterwards. Take your iron with a little Vitamin C, (because Orange Juice is gross).
I found if I broke the rules and ate, it would cause constipation, fibre pills helped. Of course retesting your iron levels after a few months is advisable.
Hi WideBody , I was curious about your pregabain dosing. I recently switched from gabapentin 1,200 mg (two 600mg doses, two hours apart before bed) to pregabalin. The gabapentin just wasn't working. I've never seen it recommended that pregabalin be broken down into doses the way you describe. Does this strategy allow you to sleep later? Was is recommended to you or did you find this out on your own? I may end up following your example. (My understanding is that one should not take more than 300mg at a time).
BAK524 , I wish I could say I was told to do it this way, but I had to figure it out. I think I take one earlier to be effective when I go to bed. Then one at bed time. If I get "that feeling", I wouldn't hesitate to take it earlier in the evening, I just don't find the need.
I think that the first thing anyone should do after they are properly diagnosed as having RLS is to have their ferritin checked. Some people find that raising their ferritin to about 350 makes their RLS go away immediately. This is a small fraction of sufferers but my daughter was one of these lucky people so I can attest to its truth. Then their appears to be a sliding scale of success. Perhaps a quarter of RLS sufferers find complete relief after some period of time after their infusion. I think that if you get no relief in about 12 weeks then it's not going to work for you. Something like another quarter get partial relief which is a good starting point for any other treatment.
You will probably find it difficult to find a doctor who will give you an infusion because its not recognised as treatment for RLS in Australia. I can give you names of a couple of doctors in Melbourne who might help you.
The plan is to have an intra venous infusion and then a blood test after 6 weeks to make sure your ferritin level has gone up and then a further blood test in a couple of months to make sure its stayed up.
I will send a private message with some ideas for non drug treatments. In my own case I have been helped by adjusting my diet and finding that I was intolerant of some foods so I now avoid them. I still have a bit of RLS and I am working on expanding my diet for the sake of the health of all the other parts of my body.
I am treated by a Movement Disorder Neurologist at UC Health Anshutz in Denver. There have been many studies that conclude, people with moderate to low levels within the “normal range” (close to 100, yet still considered “normal”by most doctors) can greatly benefit from iron infusions. I can testify that this is true. My Dr. prescribed an infusion and it greatly improved my symptoms, for months. I currently do 2 a year. Ask to be referred to a movement disorder specialist, it’s a total game changer!
When you say infusion, do you mean like being attached to an intravenous infusion?
Yes, I did Iron Sucrose, I went to the hospital 5 times, each time, I sat for about 1 hour and 15 minutes to get 200mg of iron in my blood. It really was only 45 minutes, but I had to wait afterward for any chance of shock. It was the best thing that ever happened for my RLS!
This is very interesting to me because I'm just going for a ferritin test this week , and had forgotten what the level is supposed to be. So 100 is what we aim for mostly is it?
I know this is late, but a ferritin test for RLS should be done in the morning and it should be done fasted.
Ferritin is lowest in the morning.
What you eat affects ferritin levels.
And don't supplement before the test! It skews the results!
Thanks so much for that, I was just given a blood test form to take to the path.lab. I wasn't told about the fasting, in fact my GP said no need to fast, also I wasn't aware of the ferritin levels being more accurate in the morning before supplements. This information is very helpful.
The information comes from here, sciencedirect.com/science/a... I wish more doctors knew where to find this information.
Good luck.
Your help is much appreciated.
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